I was 15 years old when I found out my grandmother was diagnosed with Alzheimer’s disease. I had heard of it. I knew about it from friends who had grandparents who suffered through it (and I’d seen The Notebook a million times), but nothing can ever prepare you for what comes after the diagnosis.

I tried to convince myself over and over that she would suffer less because there would come a point that she would no longer know that she was sick. But I didn’t realize that she would always suffer. She would suffer in the confusion of not knowing who she was around. She would suffer in the times where she would no longer know how to feed herself, bathe herself, or even walk by herself. And as her family, we would suffer watching the matriarch of our family, someone who was always so strong and who took care of everyone, fade before our eyes.

My grandmother gave Alzheimer’s quite the fight. She never let it dim her light. No matter how bad the day was, she always found a way to smile, and made the rest of us smile around her. However it was always difficult. I moved away to California to pursue my dreams at 17, which is what she wanted for me, but I couldn’t get over the fact that I wouldn’t be there for her as she progressed in the disease. I called her every day, FaceTimed with her and came home as often as I could. The heartbreak set in every time I left home, because I never knew if that was the last time I would see her again. And every time I said “I love you” to her in the last few years, my mom would have to tell her to, “Say I love you, too.”

The last time I saw my grandmother was during Christmas break of 2014. I don’t know why, but I had an overwhelming feeling that that would be the last time. I went up to her room where she sat in her chair most of the time, and I knelt beside her and held onto her hands. I knew at this point the disease had taken hold of her so much that I could literally say anything to her and it wouldn’t confuse her or necessarily register. So I sat there and said my final goodbye.

I thanked her for shaping me into the woman I am today, for her never-ending love, for her support, and I told her she would always be my angel. I looked at her and said, “I love you Vovo.” She smiled at me, and without anyone telling her to, and without hesitation she said, “I love you, too.” In that moment I knew I had to let her go, and I promised her that I would do all that I could to find a cure.

I lost my grandmother, my best friend, on April 2, 2015. Alzheimer’s may have taken her mind and her strength, but it could never take away her love, her kindness and her beautiful heart. Life is about creating ever-lasting memories, and my wish for the world is that we all are able to remember those memories when it’s our time to leave this earth. I will spend the rest of my life trying to help find a cure.

About the Author:Katie Stevens is an actress and singer best known for starring in MTV’s scripted series “Faking It.” She is an Alzheimer’s Association celebrity champion, working to raise awareness for the cause in honor of her grandmother who she lost to the disease. Katie also serves on the Hilarity for Charity committee.

Hello Katie, Thankyou for sharing your grandmothers story. I also, have witnessed my grandfather suffer with alzheimers, and slowly lose his memory. The hardest part for me, was seeing him fade in and out. There were times that he would have moments where he would realize where he was, and suddenly remembered who we were and he would start crying because he realized what the situation was and how much of a burden he was to his family. It was torture for all of us watching him go through this horrible cycle of going through these phases of rememberence and then back to being completely oblivious to everyone and everything around him. Then every time he started to come to, he would start crying because he remembered he had alzheimers and that he was in a nursing home. It was so so painful to see him cry and then in an instance he was gone. My grandfather was a kind softspoken man. He never, not once got loud and angry. He was so smart. He could fix or figure out just about anything. I mean, when it came to DYI, he wrote the book. He built a really cool air compressor out of an empty propane tank and the head of an old motorcycle engine. He could build just about anything out of old junk. He would always talk to me and loved spending time with all of us grandkids. He never talked down to us like we were just young annoying little kids. Instead he would talk to us on our level, just like he was one of us kids. He taught us how to water ski when he was in his late 60s. He was quite an amazing person. One time after I got punished, back in the days when parents used thick leather belts. He came in my room and sat next to me on my bed. He put his arms around me as I was sobbing. He looked at me with streams of tears running down his face and with extreme emotion in his voice he said, “grandson, I’m so sorry you were punished in that harsh way. He told me that just because I was being a kid, and got my pants muddy from playing in the creek, was hardly any reason for the beating I received. He was my refuge from my anger driven abusive father, who believed in using thick heavy leather belts and whipping his children every time we messed up. It didnt matter how big or small the incident was ,the punishment was always a whipping. My grandpa was so special to me. He was my best friend, and was there for me when I needed him most. Nothing before, or after his fight with alzheimers has crushed my heart and soul so badly. It was probably the worst emotional trauma I have ever endured in my life. Its a damn shame that even all these years later, medical science still has no cure for this horrid disease. I am all for any new research and with a heavy heart. I want to say to all the doctors, scientists, or anybody else involved in fighting Alzhiemers. Thankyou, please don’t give up. Please don’t get discouraged. From the bottom of my heart Thank you so much. God Bless you.

I had to watch my own grandmother disappear before my eyes from Alzheimers 30 years ago. Now I am watching my mother walk the same path. It is incredibly painful and heartbreaking. My sister, brother, father and I are just in agony over losing her little by little. How can we still have made no progress after all this time? Will my daughters have to watch me leave them little by little? We must find a cure for this soul stealing disease. I fight for a cure for my grandmother, my mother, myself and my children. We must keep hoping. Thanks for sharing your story and for fighting to cure Alzheimers.